Brunswick teenager battles back from debilitating Devic’s Disease

After more than five months in the hospital being treated for a rare disease, Caroline Hinckley is home with her family, including her mother, Kristie, and on the mend.

By Darcie Moore, Times Record •July 13, 2011 12:23 pm

BRUNSWICK, Maine — Approximately eight months have passed since the symptoms of a rare autoimmune disease landed Caroline Hinckley, now 17, in the emergency room at Maine Medical Center in Portland and down a long road to diagnoses, treatment and painful baby steps toward recovery. In November 2010, an array of changing and rapidly worsening symptoms that included loss of feeling and movement from her neck down, led to Hinckley being diagnosed with Devic’s Disease (Neuromyelitis Optica) — an inflammatory disease of the central nervous system.

Perplexed and terrified by the teen’s progressively deteriorating condition, her family and physicians turned to Dr. Edward Fels, an insightful pediatric rheumatologist who had previously encountered a case of the rare disease and recognized its symptoms in Hinckley.

His intervention placed Hinckley on the slow road to recovery, and Hinckley’s mother, Kristie, said she thanks God every day for Fels.

After undergoing months of treatment for Devic’s Disease and rehabilitation, Hinckley said Monday she is now on much less medication. In late February, after eight weeks at the Barbara Bush Children’s Hospital ward at Maine Med, she was transported to a rehabilitation facility in Boston for seven weeks of physical and occupational therapy.

In March, she moved to the New England Rehabilitation Hospital of Portland, so she and her parents — who have constantly been by her side — could be closer to home.

Within about a week and a half at the New England facility, Caroline stood on her own for the first time, according to Kristie.

Returning home the day before her birthday in late April, Caroline said she returned to classes at Brunswick High School about a week later. She motored all over the school in her power wheelchair, Kristie said. School administrators moved two of her classes downstairs to make sure she could evacuate the building safely in the case of an emergency. She completed her junior year with A’s in the three classes she was able to take, and will begin school next school year as a senior, which will “be like a fresh start.”

In February, as feeling and mobility started returning to her right arm, Caroline told The Times Record how excited she was to be able to scratch her nose and hold the telephone to her ear while she talked. Now, she can get up out of the chair herself and walk with a cane. The wheelchair stays in the car for the most part.

“It’s a far cry from where she was,” Kristie said. Now, Caroline and her mother plan to make their first college visit at the end of the month, three more in August and another in October as Caroline seeks out a college or university where she can study fashion merchandising.

While happy to be home after she — and her parents — spent five and a half months in hospitals, her return still proved difficult. Caroline had just had an Intravenous Immunoglobulin (IVIG) treatment, which makes her ill for about a week.

The first thing she wanted to do was sit down on the living room couch when she arrived, and she did. But when it came time to stand up, she realized she was unable to get off the cushy couch. Then she got stuck on the stair lift at home.

The physical ramifications of some of the medicine Caroline has taken to fight Devic’s Disease have added to the challenges of recovery. The steroids she took caused her to gain a lot of weight in a short amount of time, but she’s already lost 31 pounds.

Chemotherapy triggered some hair loss, but it’s growing back. This was a difficult combination for a girl who loves wearing makeup, doing her hair and fashion.

Putting matters into perspective, Kristie said the two agree it’s better to be able to walk than to be bed-bound with a great head of hair.

On Feb. 4, the Hinckleys’ friends and family held a fundraiser at the Brunswick Elks Lodge to help defray the costs of living and of Caroline’s medical needs. The fundraiser raised more than $26,000, and people continued to send cards and donations — some complete strangers — to push the overall total close to $30,000. That community outpouring helped pay for the stair lifts and wheelchair ramp in front of the house and other medical items.

“I cannot even express how much that we appreciate what friends and family and the community did for us with that fundraiser, because we never would have been able to make it,” Kristie said. “My husband (Don) took six months off from work … I just can’t even express how appreciative we are of that.”

Although Caroline still has a long road ahead of her, her mom said Monday, “I want people to know she is doing great.”

“You always want to help other people who are in situations like this,” Caroline added. “But you never think that it’s going to be you.”

As Caroline continues her recovery, she draws inspiration from the story of Bethany Hamilton, who lost her arm in a 2003 shark attack.

Caroline said Hamilton learned to live without her arm and will never get it back, whereas Caroline hopes she’ll regain full use of her limbs. She and her mother watched a film about Hamilton’s story called “Soul Surfer” and were moved to tears by the relevance and similarities to their own struggles.

In April, the Make-A-Wish Foundation offered to grant a wish for Caroline. She hopes to travel to Hawaii to meet Hamilton, and perhaps swim with dolphins.

Kristie praises the Make-A-Wish Foundation, explaining that until Caroline’s wish is granted, it gives her something else to focus on instead of her condition, and something to be excited about because, although Caroline is improving, this journey remains difficult.

If there is one message Kristie could underline for parents whose children fall seriously ill, it is to advocate for their child and make sure the medical staff doesn’t do anything without parents knowing first.

As she was struggling with the most difficult aspects of treatment, Fels said he wanted Caroline to be able to walk into his office by the end of the year. “Little does he know we’re going to be walking into the office next week,” Kristie said.

Caroline plans to hang a plaque in her room with the phrase she found online that says it all: “Enjoy the little things in life, for someday you will realize they are the big things.”